because life didn't give me a manual when it gave my mom ms

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It’s a funny thing about life. No matter how old you get, sometimes life just kicks you down and you just want your Mom. I was having one of those moments yesterday. I was wallowing in my head for a lot of reasons. I tried hard all weekend to shake this feeling but it just kept getting worse.

I actually thought about calling Mom at one point late Saturday but stopped myself thinking, no, that’s just going to frustrate me even more….Mom won’t totally understand….I’ll have to explain everything even more….because she isn’t going to understand and I’ll have to explain everything even more…and then I’ll get more frustrated…and be more upset than when I started….so I didn’t call.

Then I got to Sunday and I was going over everything in my head and just decided in basic words- screw it, I’m gonna call Mom. Maybe it will be a disaster but maybe I’ll be surprised. Well I was not only surprised, I felt quite a bit better after the phone call. There were some tears, there was Mom’s understanding voice and the bottom line is that there is something about sharing your feelings, your true honest feelings with your Mom- no one understands quite like your Mom.

I don’t do it often and I have learned to problem solve and mentally triage issues more on my own given where Mom is at and where I am at- plus to be honest, some of the issues I face involve the changing dynamic of Mom in my life because of her MS.

But I realized something, Mom may not be able to walk, stand or hold herself up, she may not be able to do the things with me that she once could but no matter what MS does to her, sometimes I just need my Mom.

Have you ever had a dilemma you can’t solve immediately except with time? Have you ever had the same thoughts swirling around but can’t seem to shake them? Have you ever just quite frankly needed your Mom?

It’s been a little while since I last stopped by this place. That is for many reasons:

I had an insane fall. It kicked off with Sister K getting engaged in August and then nonstop weddings, bachelorette parties and traveling every weekend until pretty much the end of the year. I wish I could say I was exaggerating but I am not. I think I had two free weekends for six months.

I kind of hate MS.

But recently I have been thinking I need to write about this more. If for no other reason, there are other people out there dealing with this like Sister K and me. I just know it. I see the comments when I google “mom has MS” and I see the comments on MS message boards. This can be a very ugly disease for the the people who have it and the people who love people who have it.

So where are we with Mom’s MS? To sum it up I should probably say “we’re hanging in there.” Mom can’t walk, can’t stand and can’t sit up on her own. I’ll let you fill in the blanks with how everything else works in our house because of that.

We have people coming into our house 24/7 during the week and on the weekends at night. Something that has evolved because Dad was not sleeping on the weekends and running himself ragged after working a full week. The people coming into our house? That has been a mess entirely on its own. One I will share in another post.

Dad believes Mom can improve. So I listen to him say this. Do I think she is going to improve? I am not so sure. I try not to be known as the cynical one but all I have seen is her get progressively and steadily worse…not fast and it has happened over time…but it has happened. He sees it differently but for him, that’s his wife. That’s his forever person. I have also realized the relationship is very different than mine with Mom.

Out of the ordinary though- we are planning a wedding for Sister K and Future Brother J. It’s been a spark of excitement. On the flip side it is a slowly growing spark of stress about how we will manage Mom for the wedding. I will blog about that too.

So here is where we are. Where are you at today beginning this New Year? How is your family? How is your health? Does the idea of not talking about a topic that upsets you make sense or do you believe it is through talking there is healing?

The number one thing people like to say to my family is “let me know if you need anything.” I realize they probably have good intentions but I have also realized this is their key phrase for several reasons:

It gets it mentally “off their plate.” They can think of my family and then think to themselves that they need not worry because they said “let me know if you need anything.”

They care but do not know what else to say.

They care but do not know what to really offer to do.

Here’s the issue with this when your Mom has something like MS- MS is not temporary. It’s not like Mom is in the hospital for a little period of time and we need someone to feed the dogs. It’s not like Mom is going to get well and needing your help is temporary. MS is going to continue but I have noticed that the offers of “let me know if you need anything” tend to discontinue after awhile. Not that people do not offer, instead they disappear.

I have noticed recently that a lot of our family friends don’t call as much. Couples my parents used to get together with do not get together with Mom or Dad or call to check in on them. Instead they have just disappeared. Mom gets down thinking she doesn’t have any friends. The primary people in her life are Dad and her two care takers. She text messages her close group of friends from college on a daily basis on a big group text. She keeps up with people on Facebook. She essentially watches life go by as she sits still at home.

It is sad and something that is starting to bother me. I told Sister K from now on when people ask if they can do anything or ask how Mom is doing, instead of giving them an answer about her physical health, I am simply going to respond “She’s really lonely. It would be great if you would give her a call or stop by to say hi.”

I am curious what people’s responses would be in that scenario. Would they act? Would they call? Would they follow through? I think the sad part is I honestly do not know. People get busy. They forget. They don’t understand what our family is going through. They don’t understand what it is like to have a Mom in this situation.

What lesson have I learned in all of this? I have learned do not ask if people need anything. Instead insert yourself into their life and do something. Do not wait to be called. Take the initiative and make the call.

Choose not to disappear. Appear. Appear again. And appear again. I promise I am never going to forget who showed up during this time. I am also never going to forget those who disappeared.

What are your thoughts on the phrase “let me know if you need anything?” Has your family ever gone through something tough and people stepped up or people disappeared? How do you manage emotions of being disappointed by people in your life?

Mom is on a lot of medications. I also know that cognitive issues can result because of MS. I go back and forth on whether Mom’s changes mentally are from MS or from medications. Dad seems to think medications. I think it is easier for him to think that way. I tend to think in the middle.

One thing that makes this tough this is the invention of a little thing called Facebook. Sometimes Mom will comment on people’s walls several times in an hour not realizing she already did that…or not realizing it is strange. It is difficult for me because Mom is the person who taught me my social cues, taught me how to behave and how to act and now I am watching her change in that manner.

Specifically yesterday I logged on to Facebook and saw she had commented on a family friend’s wall three times in less than an hour. It came up on my news feed so I can only imagine how many other people’s news feeds it came up on too. Normally I am good with ignoring these things but this time I wasn’t. I called home and Dad answered. I explained what had happened and he just responded by first defending Mom saying “I don’t think that is that big of a deal.” And then when I got further into it he said “look I just don’t care. If people want to think things let them think things. I am not going to go in there and tell your Mom something and embarrass her.” Which I get…yes. But still it bothered me. I think we are fighting several battles right now and one is in the court of public opinion of Mom and our family. I don’t like when people are around Mom and talk to her like they would if she was an elderly Grandmother. I don’t like when Mom’s friends talk to me about their own Moms who are in their 80s and compare my Mom to them. It all upsets me. So when I see things like this happen it frustrates me since it means this is just one more instance for people to see.

Maybe it is something I need to come to terms with…I can’t fix any of this or make it go away. I especially cannot control Mom. I can’t change people’s opinions. But it’s hard. And sometimes I snap. Sometimes I can’t make a joke of this situation and sometimes it bothers me. Last night was one of those instances.

How do you manage people’s opinions? Do you worry what other people think or are you how I aspire to be and don’t care? Does it bother you when people treat you or a loved one differently than they should be treated?

In a perfect world dealing with Mom’s MS would only be stressful because of MS. It would not be more stressful because of others. People around us would cooperate and be helpful everywhere we went, they wouldn’t make comments, give us looks or stand in our way. I learned a brutal reality while we were on vacation last week that it is very much not the case.

In the real world, people stepped in front of Mom as she tried to roll around in her scooter. They would sit and stare at us when we are trying to help move Mom. They slam doors on us. They say rude comments when we are trying to use the scooter through the lobby. People are rude.

The most shocking moment of the trip is when we boarded the airplane second in line behind someone who was so not handicapped the thought of it still makes my blood pressure rage. We flew Southwest Airlines and they select which wheelchair is going to board first based on what method I do not understand. Because if it was by need, we would have gone first. We informed the gate attendant that Mom was going to need a physical lift, aisle chair and assistance to get on the plane. The gate attendant took another woman who had her own wheelchair and her husband who followed behind and they rolled on to the plane and took the number one spot. Mom on the other hand needed to be the first on the plane because she had to use an aisle chair to get to the first row. These people just sat and stared while mom was wheeled in her aisle chair and had to sit in the second row because they had taken the first row on the left, the only side she can transfer to easily.

I realize there are a lot of reasons I may not be able to see why someone may need a wheelchair. Allow me to explain- How do I know this woman didn’t need this extra assistance and position in line? Because my family was the last off the plane. And after everyone was off and we were waiting for assistance for Mom the flight attendant said, someone left their wheelchair. Someone used it to get on board and then left it. She was trying to figure out who it was and I knew exactly who it was because I had watched this same couple walk off the plane first without their wheelchair. I was livid and kept my mouth shut in offering up the information I had about the owner of the wheelchair. You needed to be the first on the plane in your own wheelchair yet you didn’t need it when you got off? Is this a joke?

The flight attendant also said it is interesting that they usually board about 9 people with wheelchairs and miraculously cure about 4 of them in the air and they walk off the plane. People who just want to be on the airplane first. Can you believe this? I would never even imagine doing something like this but it is happening all over the place on Southwest Airlines. I personally think it was to do with their boarding policy being first come first serve. I need to watch more closely the next time I fly a different airline to see if the same issue exists. As this was my first time flying with Mom, it was the first time I actively noticed this.

So where does Be Aggressive come in? Well in a few distinct instances:

The security guard wanted mom to take off her shoes to be wheeled through security. This is actually a big ordeal and painful for Mom- I should’ve said no.

We should’ve demanded Mom be the first on board. I guess the reason we couldn’t is because we were focused on about 500 other things at that moment and you are at the attendant’s mercy, Mom has MS- when you are actually handicapped nothing is easy and people should be respectful of that piece of your life.

A man yelled at Mom to slow down in her scooter through the lobby when he was the one who stepped in front of her. I should’ve turned around and yelled back.

On the return trip I was trying to get Mom’s medicine out of her overhead bag while people were boarding the plane, not blocking the aisle at all, and instead of giving me a minute the flight attendant yelled at me that there was no baggage space above. Get a grip jerk! I snapped back I am not trying to put a bag up I am trying to get my Mom’s medicine down and sat down- without the medicine.

The police officer yelled at me when I drove the car up when we had arrived home telling me I couldn’t leave the car parked there. I said I had two wheelchairs inside and he continued to be condescending, yelling at me to move it. I yelled (because we were communicating in a loud environment not even near each other) I’ve got a Mom with MS and an 86 year old Grandfather. They can’t physically get out here. So he backed off and said I could have a few minutes.

But still. It shouldn’t get to that. It is just the initial gut reaction society has that you are in the wrong, you aren’t telling the truth, you are taking advantage- guess what society, you could try to help us out just a little bit! Sometimes we are at our wits end with everything we are juggling and all we need is someone to be nice to us and our family. Someone to hold a door open. Someone to help me find room for my overhead bag. Someone to make a funny comment to Mom. Because those tiny things, they did happen during our trip and they may seem insignificant but they meant the world to me and made me feel like we were going to be okay. They made me feel like other people had our back.

I imagine it is because of people like I described above who are so clearly taking advantage of the systems in place for handicap people that those who truly need the assistance have to fight to have it. I say fight to have it because that is how I feel. Numerous times did Sister K and I have to get aggressive with our voices on the trip to get people to move, to get things done and to get some help. It is not in our nature to do that or to respond in that way. We were raised to be polite and not stir the waters until necessary. We are being forced to learn in a strange way how to stir the waters and how to quite honestly, BE AGGRESSIVE, BE-BE-AGGRESSIVE.

Lesson Learned: Look out for others when you are traveling or in daily life. Get out of your own bubble and recognize when someone may need some extra assistance or just an extra smile. It can be more powerful than you realize. And if you are on the receiving end of rude people or poor service with a loved one, get into the habit of fighting back for your loved one. Don’t think about it or think about if you are being rude. Just do it.

I am curious if other people have had similar issues with traveling, people taking advantage of handicap situations or people being rude? Or maybe you remember a distinct moment when all you needed was one person to show you some kindness in a very stressful situation and they did, reminding you that people are good?

My family just returned from a week long vacation in Las Vegas. Dad, Mom, Sister K, Grandpa and I all went and flew together from home. Husband wasn’t able to make it because of work. This trip has given me so many thoughts, feelings and emotions I need to flush through. The biggest of all- the lack of control and anxiety that comes along with traveling with Mom who right now for all purposes is essentially handicapped. Mom cannot physically stand or walk therefore she needed wheelchair assistance from the beginning to end.

Monday came, our official travel day, and I woke up early and just felt stressed. On top of everything else it was also pouring rain which also added another item to the list of things I cannot control- weather. I felt like the entire day was a long check list and I would finally be able to let my guard down once we were physically in our hotel rooms and I knew we had made it.

What was on the checklist?

Get Mom in the car to the airport.

Get Mom out of the car at the airport and into a wheelchair. Get Papa a wheelchair too.

Get luggage checked and boarding passes printed.

Get Mom and Papa through security.

Get to the gate early enough for pre-board.

Get Mom on to the plane with special assistance of the aisle chair on the plane.

Get Mom off the plane in Las Vegas.

Get Mom back into her wheelchair.

Get our bags.

Get a car to drive us to the hotel.

Transfer Mom from wheelchair to car.

Transfer Mom back from car to wheelchair at the hotel.

Check into hotel and hope we were able to get adjoining rooms.

Arrive in hotel room and figure out how to get Mom into a different bed.

Get food for everyone.

And that concluded Travel Day.

I would say this was the most stressful day of the entire trip. Even traveling home was not nearly as stressful. But I felt like the entire day I had a check list in my head and I was checking items off as we went along. Monday evening Dad, Sister K and I all went downstairs to get food for everyone and we all had a cocktail while we waited for our food. I felt like in that moment of cheers it was to think we did it! We made it.

I keep running everything through my mind wondering how I could’ve had less anxiety or less nerves about the situation. Sister K seemed fine. Dad seemed a little stressed but is much more deal with the challenge as it comes. Do I think about it wrong? Do I need to stop thinking about the overview and go one step at a time? Can a person change how they deal with things like this? I know Sister K didn’t have a running to do list in her head on travel day. I don’t know.

We did make it though and it all worked out great. But now in hindsight there were important lessons I want to remember for the future.

Lesson #1: Try not to let the overview of the entire travel experience overload your emotions. In my case there were honestly moments in the morning before we left for the airport that I felt so stressed and overwhelmed that I secretly felt borderline sick. That’s not good and I need to find a way to process that better.

Important to Remember: It always somehow all works out. It is stressful in the moment but in the end it figures itself out. You can’t predict every bad scenario and the outcome. You also can’t have a back up plan for every plan.

I learned a lot on this trip and plan to spend the next few weeks processing all these lessons…but overall:

Did my family bite off more than we could chew taking Mom with MS and Papa who is 86 to Las Vegas? Maybe.

But was it worth it because of the memories we have given them and now have? Yes.

Will we do it again? I don’t know.

Am I glad we did it this time even with the additional stress? Absolutely.

How do you handle stress of the unknown in these kinds of situations? Do you ever find the task at hand daunting because of all the to do list items it involves? Do you have experience traveling with someone handicapped and managing the additional items involved there?

It’s amazing how the mind works. I am beginning to think that when I look back on how I am mentally able to process everything going on with Mom and its impact on my family, I will someday wonder how I did it. I will someday be on the other side of it and look back and think how did I function through all of that? I most likely don’t give my mind enough credit, instead questioning its reactions to everything.

Mom is going home from the rehab facility tomorrow. Sister K and I talked to her about it Wednesday night in a conversation that went in circles. Circles in the fact that we talked about the same thing several times and we both weren’t sure where it was going. We got disconnected in the middle from Mom, Sister K called me back before calling Mom and all we could do was laugh and say “whatttt is going on right now???” Moments like that I can honestly say with every ounce of my being I do not know what I would do without my sister.

I talked to Dad about it a little yesterday and some more today. He told me he had gotten the file from the place and it said Mom had been “self limiting.” An interesting choice of words…taken to mean she isn’t pushing herself like she should. Other charts revealed she had not improved very much. Basically she will be returning home and after one month, we are exactly where we were a month ago. My exact thoughts about all of this initially have been realized. So what next?

Dad said he is bringing in a new company and people to stay with Mom during the day/night. Bringing in a physical therapist to work with her 1 hour a day. He’s going to explain she has to get improve because this is the last option we have…last option before what? I thought rehab was the last option? Now this is the last option?

I realized something on the phone. I could’ve said exactly all of that to Dad on the phone but I didn’t. My conversations on this topic are having to shift a little with Dad because I am having to listen but stay quiet and supportive…even though deep down I really feel very differently and have my own very different thoughts. The words used have become something of a “same ol same ol” in our house. I feel very same ol same ol right now about everything. People ask how Mom is doing? How was rehab? Same ol same ol. This is a big reason I think why I kept this so quiet from everyone…because I wondered deep down if this would happen. I’d rather have never said anything then have to say we are back to same ol same ol.

But what happens when you get tired of this never ending circle we seem to be in called same ol same ol? Is it bad to wonder how much longer your family will be stuck in this never ending space of same ol same ol? Because I wonder. And as someone who hates change, I am beginning to wonder if we are ever going to see any…and dare I say I am actually beginning to pray for change. Because the lack of anything is beginning to wear all of us out. I see Dad trying to keep his spirits up. Taking any hope he gets from anyone as the end all, be all word. I just don’t react the same. Instead when he talks to me and tells me these plans for Mom, I just think same ol same ol. Maybe its bad or maybe it is how my mind is coping with it. The brain is an interesting place and I can’t imagine it is easy to process all of this…maybe instead it has decided this portion of my life is going to be stuck in same ol same ol, so I can remain the support system my family needs without really acknowledging everything going on…I have to trust my mind because it may have decided that if it stops to acknowledge everything going on, it will be overwhelming on levels even it cannot handle.